Family facing 'worst calamity' as girl waits for heart transplant

A family says they are facing the "worst calamity" as they wait for a life-saving heart transplant for their five-year-old daughter.

Brie McCann's family want her moved to Great Ormond Street Hospital in London before she becomes too unwell to travel for a transplant.

She suffers from a rare heart condition called Ebstein's anomaly and has spent the last four months in the Royal Hospital for Children in Glasgow.

The McCanns say they have had "mixed messages" from doctors over where Brie should be. However, both hospitals insist they are "working together" to support her.

Scotland's health secretary Neil Gray told BBC Scotland News that he has contacted both hospitals to "get a clearer version of the truth" for the family.

Brie, from from Robroyston in Glasgow, had originally been due to have heart surgery at Great Ormond Street in December last.

Mum Jodie and dad Gary took her to London for the operation, but were told she was too unwell to proceed.

In March, Jodie said "time is running out" in a desperate plea for more help.

Brie was put on the priority list for a heart transplant and taken into full-time hospital care in Glasgow when her condition deteriorated.

Speaking on behalf of the McCanns, family friend Andy McMahon said Brie has been an "absolute fighter" in hospital.

He told BBC Radio Scotland Breakfast: "She is deteriorating rapidly and the family are doing what they can to comfort her.

"She's struggling to eat, she had a Pringle the other day and everyone was sort of celebrating.

"That's how dire it is, she has a permanent feeding tube."

Five weeks ago, Brie returned to Great Ormond Street for a potential transplant, but it could not go ahead.

It is one of only two hospitals in the UK, alongside Newcastle, that can carry out heart transplants for children.

"She got to the hospital and was anaesthetised, but then the heart was deemed unviable," Andy McMahon added.

"The family were devastated again, they were so close to getting the life-saving treatment that Brie needs."

Ebstein's anomaly is a congenital heart condition where a person has trouble with the tricuspid valve - which helps control blood flow in the right side of the heart.

It can cause several different health problems, with Brie suffering breathlessness, constant coughing, dizziness, fatigue and having a swollen tummy, partly because her heart and liver are larger than normal.

Andy says that Jodie, Gary and Brie's three-year-old brother Oran were "holding up as best they can" under the circumstances.

But he said uncertainty and mixed messages from medical staff in Glasgow and London had created a "tragedy on top of a tragedy".

The family were told last Friday that Brie would move to Great Ormond Street for full-time care, but this decision changed just days later.

Andy added: What's been made clear to us is that the clinical teams in Glasgow and Great Ormond Street seem to have differing opinions on what's best for Brie.

"We've been told by very senior people in Glasgow that they want Brie in London, because she's going to get too sick to travel soon.

"But then there was a complete reversal of decisions, Great Ormond Street has said Brie was getting the same level of care in Glasgow as she would in London.

"The question is, when this heart becomes available, is she now going to be too sick to move? Are we going to have lost our chance?"

The McCanns say there has been a communication breakdown over Brie's care and they are now facing the "worst possible calamity".

"There's a vacuum that exists where Jodie and Gary are trying to contact people in Great Ormond Street," said Andy.

"You are given numbers and emails when your kid goes on the transplant list.

"But the numbers ring out, the emails go unanswered. This cannot be the way this is meant to go, this is not how you support people going through this absolute hell.

"I don't know how the family have not broken down months ago."

Great Ormond Street Hospital said its sees "every day how difficult it is" for children and families waiting for a transplant.

A spokesperson added: "Brie is receiving the same care in Glasgow as she would be at Great Ormond Street Hospital and we are monitoring her condition very closely to ensure she receives the support she needs."

A spokesperson for NHS Greater Glasgow and Clyde said that it was "working closely with Great Ormond Street and continuing to provide Brie with the best possible care locally" while supporting the family at this difficult time.

Health Secretary Neil Gray said his "heart breaks" for the McCann family and the situation that they are in.

He told BBC Scotland News: "I have asked for an update from Great Ormond Street and NHS Greater Glasgow and Clyde to find out what is happening, the communication around this, and to get a clearer version of the truth for the family.

"It appears that there is significant mixed-messaging.

"I have asked for everyone to do everything possible to make sure Brie gets the treatment that she needs."